Apr 9, 2016

"One's dignity may be assaulted, vandalized and cruely mocked, but it can never be taken away unless it's surrendered" Michael J Fox

I love that quote, because isn't it true?  We can have all kinds of things thrown our way in life both good and bad but at the end of the day we get to choose our attitudes about our circumstances each morning our eyes open.  We get to choose if we're going to surrender or we're going to fight.  A fellow Parkie friend of mine said to me this week "everyday before we go to bed we should ask ourselves the question, did I get better or worse today?  If we got better we need to get up the next day and do it again, if we did not we need to make changes."  So simple yet profound and yet how many of us actually look at our daily life in this way?

April is Parkinson's Awareness Month, so no better time for events that bring Parkie's together and help raise such awareness.  I had the pleasure of going to the Maritime Region Conference of Parkinson Canada in Halifax, NS last weekend.  It was my second conference and packed full of great information, captivating speakers and great social time with other people with Parkinson's.  It was wonderful to reconnect with some friends I made at the conference last year and meet some new ones. 

Aside from the great information there are three moments/stories that stand out from that weekend for me in particular and they weren't talks from scientists or presenters.  The first being a lovely lady I had the pleasure of meeting from Cape Breton.  I did not ask if I could use her name so in an effort of respecting her privacy I won't, but I know you're reading and you know who you are!  As I entered the room for Saturday's conference in my usual Parkie style wearing my 4" stiletto's (thank you horse back riding therapy for keeping me in my heels so far) I noticed a woman looking right at me as I approached.  When I got close enough she grabbed my arm and said "You're the one that writes the blog about PD!"  I said that yes that was me to which she responded, "I knew it the moment I saw your high heels!"  I had to chuckle at that and given my two loves aside from my family are wine and heels I thought this was great.  She proceeded to tell me that she reads every word of my blog and that it inspires her, that she greatly appreciated my honesty even about the hard stuff.  How on days she finds life hard my words lift her up and make her feel better, and that she knew I write to spread awareness that PD is not just for old people that it truly helps older people too (although she didn't look very old to me) and to please never stop writing.  Well to say I was emotional would be an understatement in fact writing about it again now has me tearing up.  What a way to start the day, crying!  However it was a touching moment for me to hear that this little blog gone wild that I started as a 'journal' per say to get things off my chest is actually helpful to other people is a true joy.  I'm honored that you let me into your life and am always grateful when I hear from people who read it.  So to you my dear, thank you for your kind words and I look forward to seeing you again and talking to you soon!  Keep fighting the good fight!

The second moment that yet again had me tearing up was this fine woman Cheryl.  We sat together last year at the conference and what a lovely woman she is.  She confided that she was at the conference in secret, she was trying to hide her diagnosis from pretty much everyone.  Worried in particular about how her son would take the fact that she had PD and trying to shield him from the worry.  We spoke a lot that day about telling our children, I felt sad for the weight of her diagnosis she must have been carrying around on her shoulders when that burden could be eased by support from loved ones.  I urged her to tell her son, knowing of course as a mother nobody knows our children better than we ourselves do and that she should do what she felt was right.  However I reminded her that kids are perceptive and that chances are her son knew something was different about Mom.  Well, when I saw her this year one of the first things I wanted to know was if she was there in secret... With a giant smile on her face she said to me "everyone including my son knows where I am today and that I have Parkinson's Disease!"  WOW... I was soooo incredibly proud of her and tormented her that I was thrilled to hear she was finally out of the "Parkie Closet" as I always call it.  You could see the peace and relief in her as she spoke of it.... And with her permission I share this photo of her and I, out in the open, not ashamed to have PD and no longer trying to hide it!!!  I love it, and love you Cheryl for your courage, thank you for letting me be some small part in this big victory for you!  I hope some of you reading this that may be hiding your diagnosis may find courage in Cheryl's story.


People with Parkinson's fight hard, some give up sadly but I think the vast majority of us are in it for the long haul trying to find ways to live well despite the disease.  Stories of their successes and overcoming obstacles are truly inspiring.  My friend Peter who heads up our monthy Young onset PD video calls for support could barely speak to be understood when I first met him.  Sadly PD had taken control of his voice and often he would have one of us co chair our meetings because he'd get stuck on his words.  He started music therapy for his speech and the transformation is a beautiful thing to have watched.  He no longer requires a co chair, if he starts to get stuck he simply taps his fingers and talks to the beat, or sings the words and they come out clearly and beautifully!  I often tease him if he gets stuck telling him to serenade me and he always does when I ask.  The brain really is a remarkable thing how it can be retrained if you put the effort into it like Peter has!

My point of these stories during PD Awareness month is that you should NEVER give up while we all fight for a cure.  We all have different battles with PD, but we all have it in common.  And if you think staying in the Parkie closet or steering clear of support group meetings because they either scare you because you're young (I get it) or you think you don't need them let me tell you, they are great, even when it's scary.  We learn from each other, we inspire each other, we motivate each other to do better.  WE are a community of capable, great people who can still achieve amazing things and do not ever let the disease tell you otherwise.  Find a Parkie friend to lean on, you can help each other through the tough days because as wonderful as your family and friends may be, sometimes you just need someone's ear that actually understands the challenges you face and lets face it; you don't want your love ones to understand it because you don't want them to have PD.  But you do, you didn't choose it but you can choose how to live with it!

So live on my Parkie friends, fight hard, find the joy in everyday, don't give up and keep inspiring each other!